A number of years ago, well before my first brain tumor diagnosis my pastor at the time, Kevin Seymour, preached a sermon on the Leaners and the Lifters. In relationships, some people are Leaners; they always need to be on the receiving end of the relational exchange. We’ve all got some of those in our life. But there are some others who are the Lifters. When they are walking alongside you they make whatever load you’re carrying a little lighter. You never actually ask them to be a Lifter, they just do it.

One of the harder parts of living with a brain tumor, for me anyway, has been the recognition that I am a Leaner more often now – it bugs me; probably always will, but wow, am I grateful for all the Lifters that bless my life. Kim is one of my Lifters. She’s been doing my hair (along with the rest of my family’s) for a lot of years now. Before I walk into her shop, she has already dimmed the lights. I’ve never asked her to, she just somehow knew to do it when my recurrence decided to get snarky. I don’t know this for sure, but I’m guessing that cutting and coloring hair in the dark isn’t taught anywhere. She has a bottle of water for whenever I’ve forgotten to bring mine and I need to take some meds. She stays booked full for weeks out, but is endlessly gracious if I’m too sick to drive and cancel on her. If I’m not able to lean back into the wash sink she’ll do a dry and dirty haircut; I’m thinking that must cause some kind of internal heebie-jeebie response for her, but she acts like it’s no big deal. She somehow knows if it needs to be a chatty or a quiet day. There is really no way to quantify how much a Lifter helps a rough day – in the big things and the countless little adjustments and accomodations they quietly extend to make a day easier, but it does help so very much.

For all of you who are Lifters; thank you. For everything you do and don’t do; say and don’t say, I am grateful.

I’ve been fortunate to have been given the accomodation of video-remoting in to my classes. So, when I’m in a bit of a rough spot, I can just add a necklace and pair of earrings to my jammies and slippers and no one will be any the wiser. Technology is a very good thing:-).

Good days are amazingly good! I do all the things; driving with the music on and the windows down; grocery and pharmacy; writing and lunch meeting; pedicure and an evening drive for a vanilla cone with candy sprinkles. There aren’t enough hours in the good days – I want to go to the Zoo, to Franklin Park Conservatory, to the Short North galleries, to the Art Museum, to hike Highbanks…maybe tomorrow. Regardless, today was glorious.

When I married Bill, I told him I was game to move anywhere except California or Cleveland; I didn’t like either of those places. Fast forward to 2002; I received my first brain tumor diagnosis and started researching where the best doctors and facilities working with my diagnosis were located. I would have gone anywhere in the US, but I ended up only needing to travel a couple of hours north – to Cleveland. I don’t know how many trips I’ve made up there over the years (it’s a lot) and in the gaps between appointments, tests, and procedures I’ve come to love Cleveland. There are wonderful museums, world-famous performance venues, Cultural Gardens, waterfront, amazing architecture (especially the old churches,) West Side Market, and Little Italy with one of my very favorite restaraunts; Guarino’s.

If I’d been given a vote, I’d never pick a brain tumor. But, since I don’t get to choose, I’ve discovered that if I’m willing to look, there really are silver linings hidden within the storm clouds, balancing the familiar unpleasantness with little nuggets of unexpected beauty.

Before I had my first brain tumor diagnosis, my assumption would have been that a brain tumor would be a crisis kind of health event, and it frequently does reach that point. But the reality is many of us live with a brain tumor over a long period of time. It is a marathon, not a sprint. Managing symptoms is a process and there are windows of time where there simply is no “powering through.” Sometimes, in the ongoing negotiation with the disease, the brain tumor wins the day. Hoping for a better hand tomorrow.

Friends – the ones who are more concerned for you than annoyed with you for cancelling plans, again, because you’re just too sick today. The ones who offer to pick you up and drop you off so you don’t have to drive, because they know driving is hard for you. The ones who suggest a spot in the shade instead of the sun, even though they love the sun, because they know bright light hurts you. The ones who see your fear, discouragement, and uncertainty and simply help you carry it, not wave it around for the rest of the world to view. If you find yourself, on some future day, the reluctant owner of a brain tumor, more than doctors, medicines, therapies, or treatments you are going to want to have this kind of friend beside you on the journey.

Day two and I’m already second-guessing my decision to share more personally during Brain Tumor Awareness Month. My natural inclination is always toward more privacy, not less, but mostly I’m worried that my posts will sound like whining, and that is not at all my objective. I’m sharing because I can, while many, many more cannot.

I can still work, see, access resources, walk, hear, learn, communicate; live. That makes me one of the very fortunate. I interact regularly with others in the brain tumor community who would give every possession they have to be living my reality instead of the one they must navigate. So because I can, and they can’t, I’ll share pieces of our story in the hopes that greater awareness will move treatment, resources, and prevention forward. Thanks for listening, and hopefully seeing a place where you can advocate for the 700,000 Americans living with a brain tumor.

Living with a brain tumor is a little like having a really self-absorbed, uninvited house-guest who refuses to leave. Once they’re in, there is no way to add-on space (brain real estate is a tightly closed market) so if you can’t kick them out, you spend a lot of time trying to manage them.

At some point, pretty much every day/night, I’ll need to ice my brain to turn down the pain signaling a bit. The top drawer of my freezer is a rather impressive collection of ice-hats, packs, and sleeves to wear, drape, wrap, or insert into pillows. The community shares new ice discoveries, we are always looking for something that’s just a little better, so I’ve got stuff from the UK, from Canada, and from around the US hanging out in my freezer. Fortunately, there is plenty of space in there since since I don’t do much of that cooking thing. One brain, nicely chilled. 😉